Tuesday, November 15, 2011

I started a very detailed post about Jacob, but I think I will never publish it. I am chronicling what the past year has been like with him and it is therefore super detailed, I think more detailed than anyone but I need. But I think I do need it. However, I have decided to publish a cliff notes version because I think it is also important for others to have some type of idea of the challenges that we have faced with our oldest son.

We started working with ECI right at the beginning of the year, but nothing really happened for 6 months. When Jacob was 2.5 we took him in with us to the babies' 4 month check-up and floored our doctor with Jacob's lack of speech or even communication in general as well as his strange behavior (for his age at least). She said that she would contact ECI and "light a fire" but she also recommended we contact a private speech therapist as well as developmental specialist.

Upon taking him to the speech therapist, I was brought to reality on how bad things are with Jacob. Since he is my oldest child I really had nothing to compare him to. I knew he should be talking, but it was everything else that I didn't realize was so wrong. I'm sure that other people have seen with their children that even before they could talk, they were communicating. Pointing to things they wanted, going to the fridge if they wanted milk, etc. Jacob didn't do ANY of that. If he wanted something he whined. If he didn't get it soon enough, he would bang his head. It was (many times, still is) a guessing game to know what he wants/needs - is he hungry, thirsty, tired? Pretty much anyone else's guess is as good as mine. It was also pointed out to me that he didn't play with toys the way kids his age should, or interact with people the way he should.

I was told that Jacob needed ABA Therapy (which turns out is SUPER expensive and isn't covered by our insurance). That he needed at least 3-4 speech sessions a week and better yet, he should be enrolled in a special school for kids with speech problems (again - SUPER expensive). Words like "AUTISM" started being spoken for the first time ever, and other words we had heard before like "SENSORY ISSUES".

Talk about overwhelming. And upsetting. And stressful.

Things with ECI really turned around at this point though. Maybe our pediatrician was able to talk to someone about how they weren't doing anything for Jacob. I'm not sure. But we suddenly went from 1 visit a week from a developmental specialist, to 3-4 visits a week. One from our developmental specialist, another with her and a behavioral specialist, one from a speech therapist and a visit every other week from an occupational therapist.

And we went from Jacob making no progress to seeing some results. First and foremost - Jacob started talking!!! His language skills are still about a year or so behind, but considering only 4 months ago he was 2 years behind, we are making real progress. The head banging is still a problem, but it is nothing compared to what it was when he had a permanent goose egg and bruise on his forehead.

We still have a lot to work on with his speech and his overall behavior. There are things that we wonder - does he not understand us, or does he act like he doesn't understand? And we really need him to get to the point where he asks for things he wants instead of just throwing a fit.

This Friday I am taking Jacob to the school (public school) so they can evaluate him to see if he qualifies to be in the preschool program for kids with developmental delays. We REALLY NEED him to be in this program. He needs to be immersed in a program. And he needs to be around other kids more (since when he is around other kids he doesn't play with them). And because Jacob is such a high needs kid, I need him to be in this program. I need to have some time away from him everyday, so I can appreciate the time that I do have with him.

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comments:

My goodness, you must be one strong woman! I can't even imagine. Praying he gets into the program. He always seems like such a happy little guy in pictures cause he has such a great smile! Glad he is making progress. Having twins as well just sounds so exhausting. But in the end, I suppose its a rewarding sort of exhaustion : )

Even though we have spoken about these things in detail prior regarding Jacob it is still so humbling to see it in print. He is so blessed to have you and your hubby as his parents. He picked you as a mother for a reason and I know that reason is because your strength and determination have no bounds. There is no limit you won't go to so that he has the best life possible. I love you for your example and friendship and pray for you daily.

So overwhelming, especially when it is your first child! I definitely know exactly what you are going through. I am a strong believer in therapy and early intervention for children, especially ones with issues like ours. Taking care of a child with special needs is definitely like having a full time job, but all this effort at a young age makes a huge difference and really will be rewarded later in life. My daughter did Greenspan Floortime method instead of ABA at my request which was what I knew she personally needed so I'm glad the state gave me the choice. I learned that progress is progress, no matter what it is. We had to teach Lexi to point her finger at things she wanted, and I remember how great it was when she finally could tell me that she wanted something. Things other parents don't realize are blessings, but they really are to us!

Good luck with everything! If you ever want to talk about it let me know.